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Author
Topic: Does anybody else have the (Read 9059 times)

ugh, I am sick and tired of pissing outta my ass!going to the doctor on Friday to get my new cd4 results but have to talk to him about this.not only does it happen everyday...it happens a few times a day.

You are not alone. I share in your joy. In fact I think I have developed some sort of callous as a result.. no I'm kidding. Its not fun at all, its inconvenient and sometimes its embarrassing as hell. Have you tried over the counter options like Imodium or the like?

When it gets really bad I revert back that timeless classic, the BRAT diet. Bananas, Plain white rice, Applesauce and Toast. It gets old fast but it eventually works for me.

I sure do - unless I take my daily low-dose codeine. I can't take Imodium or that other drug (forget the name) because they make me nauseous.

Try the usual drugs for diarrhea before the codeine though, because you have to be very careful with codeine so that you don't allow yourself to increase your tolerance levels. I have to take a few days off every couple weeks and I have to time it with when I can stay close to a toilet. Doing this, I've been able to remain on the same dosage for five years now.

Using codeine for diarrhea works very well for me, but this is what's called an "off-label" use so officially, I use it to control the hip pain I also experience. My doctor knows my main use, however.

Of course, trying dietary changes should be your first line of attack. In my case, it makes no difference what I eat but everyone is different.

One thing you didn't mention is whether or not you're on any hiv meds. Some of these can cause diarrhea, so if you are on meds, please discuss possible changes with your doc. You need to talk to your doc about the diarrhea regardless. Don't be embarrassed to bring it up - diarrhea is a common complaint with hiv so he/she's heard it all before.

In my case, I'm not on any hiv meds but my doc agrees my diarrhea (I prefer to call it dire-rear ) is most definitely hiv related.

One thing I've found invaluable in dealing with the runs is having baby wipes on hand in my bathroom. Bry, please take note. I think I'd probably have callouses by now too if it weren't for the baby wipes. Try to buy unscented ones - the scented type tend to irritate already irritated skin.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Premeds and through three different meds I have had to endure the Hershey squirts. I've tried all the recommendations suggested and nothing has worked for me more than the short term. I have learned to live with it...it requires me to be a bit land locked to around noon or so. I've pretty much got the timing and rhythm down so for the most part no surprises. I won't lie it has cut into my social life, but the life of a hermit ain't as bad as they say it is. I wish I could offer you advice, but I can't. I guess what I am trying to say is if you can't "cure" it, it is possible to work around it. My pucker loves the feel of toilet paper enriched with Aloe and E.

I think most of us has had to endure the squirts. I usually go both ways... I can be squirting for days and end up with a sore ass and then the next thing you know I'm blocked up. I have tried over the counter stuff but can't get past the taste so what I do is eat things I know will constipate me..For me it is usally nuts or cheese. Or if I am bound up I take Colace. Hope you feel better soon...

I use to. Everyday. Bad. For several years. Like Hal, it effected my freedom to move around. I had to always know where the bathroom was at all times. If it was too public, I avoided there. Had some close calls and only a couple of accidents-- only once is humiliating, however. Then anangel a man on this forum suggested something. (philly267 gets pissed-off when i call him an angel) I tried it and it worked for me.It worked! I'm back to normal bowel movements again. Free. Free At Last!Pancrecarb MS8 (Rx only--2 capules mornings/1 capule evenings) + one Immodium (mornings only-OTC stuff)problem solved,Mike

I lost significant body mass and about 20 pounds in about six months due to out-of-control squirts. Despite my near-constant bitching, my attending physician considered it an "acceptable" side-effect. Immodium helped, but it wasn't until I fired that doctor and switched meds that it finally stopped for me.

Brent(Who is generally regular these days)

Logged

Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

I do not mind being called an angel I'm happy that Pancrecarb has helped you.

As for Seven, if you are having issues this bad you really MUST take something with each HAART dose, and not "as needed" -- and it often takes months of playing around with amounts to see what balances out your digestive tract, and it can often change over longer periods of time.

I've basically had to take some diarrhea type medication with each and every dose of other HIV meds for close to a decade. Personally I try and avoid opiates because my body is somewhat allergic to them and I vomit easily... however this prevents me from becoming a heroin junkie. However, if you can handle it and the diarrhea does not respond well to first-line choices such as imodium, look into obtaining a prescription for tincture of opium. It will definitely work, though I've heard lately there have been some ADAP restrictions with this. I know it's not on the formulary here in PA. I think you live in Canada though so perhaps that's irrelevant.

Like Brent I had similar early experiences with my doctor about the severity of my diarrhea issues, and can only recommend being absolutely resolute and vocal that they not minimize the subject. I would hope that this is less of an issue these days than it was a decade ago when Protease Inhibitors first came out.

Seven, you also need to be aware of your body being able to metabolize your hiv meds completely. When you are having these squirts there can be problems getting the full benefits out of them..... Glad your having the doc address it...

Like Brent I had similar early experiences with my doctor about the severity of my diarrhea issues, and can only recommend being absolutely resolute and vocal that they not minimize the subject. I would hope that this is less of an issue these days than it was a decade ago when Protease Inhibitors first came out.

Unfortunately not, Philly. Not sure if you were around when I was having horrendous problems with diarrhoea, but my concerns were constantly dismissed as a small side-effect I would just have to put up with. When I documented what went in and out over a 7 day period, the doc I saw (not my usual one who was on leave) didn't want to see my notes as he would then need to add it to the paperwork for the trial I was on. When my doctor returned I told him and he gave him a mouthfull. It was only then that I had a full sweet of liver tests, and an ultrasound to find out I had cholestasis.

As Philly said, you need to be resolute about these things. If it's not working for, or not acceptable, say so and don't let them be dismissive.

My bowel movements are still, however, hit and miss. Next visit I'm going to discuss Pancrecarb - Is that a brand name? do you know the active ingredient?

not every day . ... it's like 2-4 x a week for me. gone are the days of feelgood logs. now it's mostly velvet crap and some runs. but if i were to compare my diarrhea situation versus this same month exactly a year ago, i was better off last year, so maybe the meds are breaking my body down yeah, i think that's what's going on

you know sometimes I can be so dense. Alex, you're right. You're absolutley right. I really hadn't thought of it that way but, yes, it's the meds that are breaking down my body. It isn't the virus. It's the meds. I'm tired. I've got the runs.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Ann, I think I had to play around with the dosage for a good month before finding what worked for me. It doesn't come in a standard "mg" measurement but I'm on the "MS-8" dose whatever that means. It was recommended initially that I take 2/twice a day and this was an effort to decrease what was then my 5/twice daily intake of loperamide (imodium, 2mg each so I was taking 20mg of it each day... kind of a lot, no?). Also at the time I was on a killer squirts combo of Kaletra AND Invirase so I basically was on the toilet constantly. Currently the meds I'm on (fuzeon, prezista, norvir and truvada) are less intense in the poop area, though the norvir does keep me taking pancrecarb regularly.

Anyway, I quickly upped the Pancrecarb to 3/twice daily and still took some immodium too, though half as much. The thing is that Pancrecarb addresses the cause, not the symptom (i.e. absorption) whereas the other meds just try and stop you up. The thinking is that Pancrecarb, as a digestive enzyme, allows you to more optimally absorb medication as it passes through your digestive tract... obviously of great importance to all of us. Better absorption has the side effect, beneficial of course, of decreasing diarrhea. So for me it's a win-win situation.

I'm not going to promise it will work for everyone, but I'm encouraged that Mike (mjmel) has found it useful. This is not a home remedy of mine or anything, it was recommended to me by my AIDS clinic here 2 years ago, and is actually on our PA state ADAP formulary and fully covered.

One thing I'm still interested in is - how quickly does it take effect? Is it something you have to give a few days before you can see a difference? My codeine breaks are usually two to three days long, so I don't want to give up prematurely.

For me it's not just having the runs, it's also the gut-wrenching pains I get with it. It feels like someone is wringing out my small intestine - and that can go on for hours, even when I don't actually need to... er, run.

In some ways, I'm happy to stick with the codeine. It works for me. The downside is I get tired of being grilled about it. You would think that five years on the same low dose would alert doctors to the fact that I don't have a "problem" with it.

~sigh~

Anyway, how long before the effects are noticable?

And by the way, I'm not on meds; my dire-rear is totally hiv owned and operated.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Sorry if I was not clear. I don't think you should look at Pancrecarb in the same way as a codeine based medication... it's more of a long-term therapeutic thing IMO as a digestive aid. Plus it's been 2 years since I first started taking it so I can't really recall, I just know I had to play around with the dosing like I said until I got it right. Maybe Mike can weigh in or you should PM him as I know he just started on it in the past 3-4 months.

And as you're not on meds I can't even clearly say how much this will help you -- so VERY out of my ball park, dear!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think it's a combo of the meds and the HIV, but my husband and I take one bottle of Danactive everyday, and it seems to help regulate us. My husband has in addition to the regular symtoms, IBS, and his potty problems were a lot worse than mine, they have improved since starting to drink Danactive. So try that and see what works. Everyone else's suggestions are great as well.Good luckNicole

Ann, do you have a lot of gas issues? Is that's what is contributing to the discomfort? Because Pancrecarb also greatly helps flatulence issues.

Not really, no. Usually, when I think it's gas, it turns out to be... well, you know. Not nice. I quit thinking "gas" and started thinking "run!" a few years back.

Ann(who has tried Danactive and other probiotics to no avail)

[Damn hiv!]

on edit

The pain I experience feels more like my small intestines have gone into overdrive than it does gas. I've had gas attacks before now from foods, and it's definitely a different feeling, although it took me a while to realise. At the risk of sounding like a broken record... Damn hiv!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

you know sometimes I can be so dense. Alex, you're right. You're absolutley right. I really hadn't thought of it that way but, yes, it's the meds that are breaking down my body. It isn't the virus. It's the meds. I'm tired. I've got the runs.

robert

well, the good news is this past week i didn't have any dire rear. ... but i know hiv wihtout meds can cause dire rear as i suffered in early 2005 for over a week. but meds can make things crazier. the key word here is can - how apropos

I've been fortunate. I haven't had the problem with the craps before starting on medication, or after. Perhaps the meds are being gentle with me right now, along with the combination of my diet, But I knock on wood, that I haven't had this problem.

Everyday for three years. Switched to Atripla a couple weeks ago. Now I have actual bowel movements most days. Also lost over 5 pounds. I'm so glad to be away from Kaletra. Though the capsules were better than then gel caps!

I was thinking it might be a meds thing, but I'm willing to try it. I'll see what the Wiz has to say about it - or his underling, depending on who I see in August.

I'll try anything once.

Ann

I take doses of pancrecarb MS8 and Immodium (over the counter) Dosage: 2 caps in morning + 1 immodium AD; then one capsule pancrecarb MS8 (no immodium) when I take my evening dose of meds. It corrected severe diarrhea in 3 days............maybe just 2 days. I am happy with this dosage, although I might increase or decrease if need be. So far, success. When I forget to take 'em--I realize it with a few hours. That's when I was convinced, without a doubt, what was making the difference.Pancrecarb is expensive here in US. Thankfully, my med card covers it with a co-pay of $2.00. Good hunting Ann.

Thanks for your input - much appreciated! I was thinking yesterday when Alex bumped the thread that I should send you a PM about it before my appointment with the Wiz next week.

I'm really happy to hear that the difference can be seen in just a couple days. I'm even more eager to try it now, but I'm not sure I'll be allowed to have it. Depends on whether or not it's an "off-label" use. I'll be using people's experiences here in my defence, along with the fact that it's on at least one State's ADAP formulary - so it must have a proven track record in PLWs. We'll see and I'll let you know. My appointment is on the 14th.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Ann said:"For me it's not just having the runs, it's also the gut-wrenching pains I get with it. It feels like someone is wringing out my small intestine - and that can go on for hours, even when I don't actually need to... er, run."

I get those same symptoms when I take Metformin(1000mg 2x daily). I get gas and cramps from it. Let me tell you, it is hard to tell gas from a leak sometimes. I have whined to my doctor and my pharmacist to no avail. Pharmacist said it is a side effect of the pill which can last up to 2 weeks...Oh Joy....

Yes! Especially distressful when you're standing in the middle of a department store or supermarket or............ riding public transportation!

Mike

I have a car, so I am safe there but if I am behind the wheel, it is sheer misery. The gas is just terrible and usually after I'm done leaving my offering with the porcelain god, my cat won't even use his litterbox unless I light an incense then he will think about it...

If you don't have Pancrecarb in your country from what I have read you need to look for a pancreatic enzyme tablet that contains lipase, and that also is entric-coated (insures that it reaches the small intestine) and a bicarbonate (for proper pH level for the enzyme to work).

Logged

"Iíve slept with enough men to know that Iím not gay"

Dan J.

Oh yeah, I have the "squirts" everyday. I have come to the conclusion it's just something I am going to have to live with. That is why I make sure I drink plenty of water everyday. I have more problems with abdominal discomfort than I do with the diarrhea.

If you don't have Pancrecarb in your country from what I have read you need to look for a pancreatic enzyme tablet that contains lipase, and that also is entric-coated (insures that it reaches the small intestine) and a bicarbonate (for proper pH level for the enzyme to work).

Philly, we have pancrecarb, Kate told me where to find it in the British formulary. What I don't know is if it has been approved here for hiv-related diarrhea. If not, that means it would be what they call off-label use (using a drug for something other than what it's approved for) and I'm not sure my doc will write the script if that's the case. Cross your tootsies for me.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I saw Gerry, the Wiz's current right-hand man. He'd never heard of pancrecarb being used for people with hiv-related diarrhea. He had a quick chat with the Wiz and he'd never heard of it either. When I told him it was on ADAP formularies in the States, he became very interested. They're looking into it and will get back to me when I see them next month.

We talked about how it may only help people on hiv meds (perhaps the meds are inhibiting production of these enzymes?) but he was very excited about this drug's potential. If nothing else, maybe my prompting will help others.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts